Tuesday, 18 December 2012

Leg up for ten days

When I was in hospital with Cellulitis I was in bed for ten days with my leg up and by the time I was discharged my leg looked better than it has in years. It was way better than ten days of MLD and wrapping at the lymphedema therapist. I wonder if that could be an option – taking say five days on the sofa with the leg up once or twice a year. Perhaps not the most productive way of spending ones hard-earned holiday and one might have to take a daily shot of blod diluting medicine as to not risk a trombosis. Perhaps not if it is only five days. When I told my therapist she said that it might not completely be the elevated leg that did the trick but also the antibiotics. So can antibiotics bring the swelling down? Who knows, but probably not. If it could we would all have been doing that from the beginning, eh. I might do an experiment some day, take a weekend with the leg up, only getting up to get food and go to toilet. Measuring my leg before and after. Any thoughts on this type of drainage?

Last week Santa Claus – dressed as a postie – popped in with a package from iHerb.com. In the package were some delicious, healthy snackbars I had ordered. Along came a discount code that I hereby share: Use the code VOQ584 and get $10 discount on orders over $40 or $5 on purchases under $40. They ship worldwide.
I got the Luna, Caramel Nut Brownie (link here). I was hungry so I ripped the package out of Santas hands, tore of the wrapping and tested the goods immediately, they were yummy! Lovely crisp and crunchy. Previously I have tried Raw Organic Food Bar Fiber Chocolate Delite (link here), also very good. These are very chewy and quite filling.


Christmas is around the corner and for once I have gotten all my shoppings done in good time so this week I am going to relax and just enjoy the Christmas vibe. Too soon it is all over and January is upon os. But not yet.

Coming up: Post about how I shop for jeans.


 

Thursday, 6 December 2012

Breakthrough

Last year I watched some of the Breakthrough programs with Tony Robbins, the supercoach from America. They were very interesting and inspiring and already back then I meant to write something about them but didn't get around to it. Now they are being repeated overhere and it is time to put some words on it.  
I imagine there are many opinions about Robbins, particularly in the therapy world. Personally I think he comes across very sympathetic, good at what he does and with an honest wish to help other people. In the programs he helps people in different places in life, people who may have been in an accident or in some other way need help to get back to living and not just surviving. The first program of the ones I have seen was the most interesting. It was about a man who at his own wedding party had jumped into the low end of a swimming pool and was paralyzed from the waist down. Very tragic. In the years since the accident, he had been miserable. He found it very hard having to rely on others for every day things. To be the man in his marriage. Not being able to do the things he once dreamed of. Robbins mission was to help the man get back to living and not just surviving and to help the couple back to each other and the life they had almost given up on having together. 
Although having Lymphedema can not be compared with being paralyzed and referred to a wheelchair there are still aspects of the situation that I think are the same and I felt that I could use some of Tonys words of wisdom. 
In this case he worked with the following seven points:

1. Rewrite your story. 

2. Confront your real issues. 
3. Discover your inner strength.
4. Redefine what is possible. 
5. Exceed your expectations. 
6. Change your way of thinking. 
7. Own your breakthrough.

Most of these steps makes sense to me but especially number four grabbed me. Redefine what is possible. That's what one has to do when ones situation changes, which it often does when getting a chronic disease and one can no longer do the same things as before, or be the same person. This is what we have to do. I've spent much time mourning what I can no longer do but gradually it changed and now I more and more work with what I can do. Also the second one, confront your real issues is interesting
I haven’t been able to find much about the program from Tony himself but I did find this page where Tony talks about the episode and there are bits from the show. On this page  another coach has interpreted the seven points.

I put some pictures here of my leg the night before I went into hospital with Cellulitis. They are not too gross, I just thought people should have a choice of not seeing them, that's why they are on a separate page. Next morning the knee was almost all red and not with the big white patch you see. When I look at the pictures the feeling and heat of the skin comes right back to me. I am thankful it is over.

Saturday, 24 November 2012

Shoes that work – a readers picture

In relation to some of the comments on this page reader Hutch here on the blog send me this picture of shoes that works for her. Thanks, Hutch! I like all of them, they are very feminine. Number four is my favourite. I haven't worn heels since Lymphedema started but now I feel adventurous and might look into it. I wear a super ugly toecap that makes my toes a great deal wider so I am not sure what I can get my foot into, even with a bigger size on the Lymphedema foot, but I am going to investigate. Shoe number one is a great Summer option with a long skirt. Thank you so much Hutch, for sharing!


I recently got these low cut boots and I love them. I got them in two different sizes and it works very well. They are from a "cheap-and-cheerful" shop but who cares, I think they look stylish, and they work for me. They have an elastic insert on both sides of the foot which makes it possible for me to wear. I can even use them with the compression stockings that has the pads. I have worn them with dressy, black trousers and also with a long dress (see the dress here, first picture). I am thinking about getting another set to have when these ones are too worn to use. I'd like to do that more now, buy two when I find something that works and that I like.


Today I've been busy in the kichen, baking a great no-knead bread in my clay cooker and then this very delicous (and very, very naughty) prune cake. Oh dear, it's good! Check it out!

Monday, 12 November 2012

Dad and Melanoma

While I was away my Dad went to a clinic for a scheduled appointment to have a couple of suspicious looking birthmarks/moles removed. The doctor send them to a lab as I imagine is standard procedure and when the results came back Dad had to go into hospital to have a little more of them taken away. Things were apparently more serious than first anticipated and they took three lymphnodes in his groin, so now he is at risk of developing Lymphedema. This morning he went for a checkup and to get the results from last time and he is now in the clear, thank God! I am so relieved! When he had the three nodes taken out the doctors said they might have to take all his lymphnodes in groin AND armpits but luckily they didn't have to.
Before the surgery they casually mentioned the possibility of Lymphedema but as if it was nothing. Dad knew better and said so, told them about me, I think that shook them a bit. I wonder if they were just ignorant of how much Lymphedema can affect a persons life or if they thought he would make trouble and resist if he knew the full extend of the sideeffects.
So far there is no indication of Lymphedema and hopefully it will never come. I can't bear the thought of Dad having to deal with the hassles of the compression stocking and not being able to wear shorts and sandals in Summer.

On the night before I went into hospital in Spain I looked up the Latin name for Rosen, Erysipelas, and when I first got to the ER I mentioned to the doctors that there was a possibility this could be it, or Cellulitis. It is just an idea but perhaps it is handy to have the names in ones phone or on a piece of paper in ones purse when travelling abroad – or domestic, I guess. The sooner a diagnosis can be made, the sooner the right treatment can be given, which I think is very important with Cellulitis and Rosen. A hint may speed up things instead of doctors spending precious time figuring out what is going on.

Coming soon: A readers picture of nice shoes that works! I also want to show you some pictures of new pants and boots I got a little while ago.

Thursday, 8 November 2012

Cellulitis

To new readers: The following happened during my big walk in Spain.

So I had Cellulitis for the first, and hopefully, only time.

The beginning
It started the day before I realized it had started. One day in the afternoon after about 15 kilometers of walking I was feeling kind of tired. Not just because of the walking, which I usually hardly felt after a little rest, but some other kind of tiredness. I was certain that it was because I hadn’t been drinking enough water, combined with the time of the month and also the stress I had experienced coming into that town. It was a larger town, it was marketday and very busy and I just couldn’t find the hostel I wanted to go to. Old ladies wanted to sell me cheese but I wanted them to show me directions. Eventually I found it, drank water, unpacked, went out for lunch, came back, showered, drank lots of water and rested. I think I even fell asleep for a bit in the afternoon.

Next morning I didn’t notice anything unusual so I set out for 14 km of walking. After only perhaps two km I felt sick and before I knew it I was throwing up and shivering with fever. I was in a forest and as I went to "the powderroom" I pulled down the compression stocking to check my leg as it felt warm I saw a red patch. I thought it was just the stocking having rubbed against the skin. I continued walking but had to rest every chance I got. After another two km I got to a little cafe where I decided to have a break and a cup of tea. I was miserable. I knew there was another ten km to the next hostel and as I sat there I realized it would not be safe to walk much further so I got the guy behind the bar to call for a taxi. As it pulled up I was spewing my guts outside.

Having arrived in the nearest town I found a little pension where I got my own room and bathroom. I found a heavy blanket that I put over the bed and went in with all my clothes on, I was shivering. After a bit I took the stocking off and most of my leg was very, very red and burning hot. The thought of Rosen/Cellulitis indeed struck me but I had never had it before and I wasn’t sure exactly what it was supposed to look like. I slept and rested for the rest of the afternoon.

I hadn’t eaten much so by dinnertime I decided to wrap my leg with the few rolls of bandages that I brought (didn't dare put the stocking on the red, hot leg) and went to the next door restaurant to eat. That went fine and I even went to check my e-mail afterwards at an internetplace. I decided to wait till next morning to make a decicion about seeing a doctor. I knew that the leg would still be red next morning but perhaps it would be a little better. It wasn’t. In fact it was worse. Stepping out of the bed to go to the toilet the leg felt tight and sore and at first I couldn’t even stand on it. It felt and looked very much like a very severe sunburn. I asked the staff to call for a doctor but they said that I had to go to the doctor as the doctor would not come unless it was really, really bad. I dragged the poor fellow into my room and showed him my leg and when he saw it he went "I’ll carry you to the doctor myself"!!! He didn’t have to though, as paramedics came and took me to the local clinic.

In hospital
The rest is history, as they say. At the clinic they took a quick look at me before sending me to a big hospital in Santiago. There I first went through all the standards – blood tests, blood pressure, cardiogram, ultrasound, X-ray etc. Around dinnertime they gave me the first bag of antibiotics, intravenous. I had never tried that before and I hope I never will again. I had quite a fever, more than 39°C so that was a lot. It took a good few days before they got that under control.

Already after the first night of antibiotics the looks of my leg had improved. Not nearly as red and hot so that was good. Still, the second I put my leg on the floor to go to the toilet it turned dark red/blue and puffed up. As if no valves or anything was working. That had me quite worried but after a couple of days that too got better. At first I worried a lot about whether the doctors knew what they were up against and if I was given the correct treatment, but once I heard the diagnosis – Cellulitis – I was certain that they were right and that the treatment was the right one. And it was. I asked the doctor if she knew about Lymphedema and apparently she did a little. That was also reassuring.

After perhaps four or five days the medicine started being a little harsh on my poor veins and they had to shift the IV several times. I was so worried that all the injections would cause Lymphedema in my arm. The last time they shifted it was rather traumatic. They had a very hard time finding places to inject as my veins apparently are not very visible. When they finally did and I afterwards lay in the darkness with both arms sore and wrapped up I couldn’t help a good cry. The next day they put me on tablets instead. The first ones made me sick but then I shifted to some powder that I later found out is for children ;-)

Day by day my leg got better, both the colour and the puffy sensation when up. The last couple of days there I was up for an hour or two each day walking around carefully, with the stocking on. Preparing for life outside the hospital.
After ten days in the hospital I had persuaded them to let me go, so an early morning I was put in a wheelchair and taken to the airport where staff took me to the plane in a wheelchair and I flew home. Even though Dad had just gotten out of hospital that morning (more about this soon) he and Mum collected me and took me home to my flat. Wonderful to be home again. My bed felt so soft and comfy.

My stay at the hospital wasn't horrible. Almost all of the staff was very kind and I was treated very good. Unfortunately only a couple of them spoke a tiny bit of English so I couldn't communicate much. The last couple of days a really kind American doctor working there came to see me. The worst bit was by far the IV. I hope I will never have to go through that again.

What brought it on?
It is hard to say. The doctor at the hospital thought it started with a small infection I had had around the nail on the big toe. I am not sure about that as it seemed to have healed up nicely and also because the red, hot sensation didn't seem to start from the foot but more around the knee area. Who knows... I imagine it had to have come from the outside, not just from a weak body so perhaps the doctor was right. I guess I should have been much more carefull with all those blisters but it was the good old "it won't happen to me" – or rather, it just didn't cross my mind because I had never had Cellulitis before and I consider my skin and my health in general to be quite good.

Now
I am good now and I am finally off the tablets. Still feel tired but I guess that's only natural after all this. There is still a tiny bit of discoloration to see a couple of places but hopefully that will disappear over time. My skin has been very dry since I got better, especially on the foot. It seems like the skin is renewing itself, a little like after a sunburn. I am like a snake, changing its skin. After all those days of lying down the size and shape of my leg was better than it's been for years, how ironic! It still looks allright but will probably fill up soon.
Some say that having had Cellulitis once one is more prone to it in the future. I hope this is not true. Hopefully my leg and my skin will become just as strong and healthy as it was before, and in the future I will definitely be more careful.

The trip altogether came to be much different than anticipated. A curious thing is that for months and months ahead of the trip I had been longing for some kind of break from my life at home. For example lying in a seaside hotel somewhere starring at the sea, reading books. I got my break, but in a hospital. For the first week I was alone in a three-bed room which was nice. One had to put coins in the TV and after a day or two I ran out and no one could change for me so there was really nothing to do but just lie there or read. My sweet Mum was super, on the second day she send me a package with newspaper, magazines, a book, knickers and chocolate, it arrived the next day with a courier. Also, the doctor went out and bought me a book, really sweet of her!

If you want you can see a couple of pictures I took on the night before I went into hospital. I took them so I could compare the next morning. They are not too gross, I just thought people should have a choice of not seeing them. I put them here. The next morning it was worse than this, by then the knee was almost all red.

Thank you so much for all your comments! I have some catching up to do with replying but I am working on it :-)

Sunday, 4 November 2012

Big walk, day 15

Hi all. This is not day 15, I am home now. I prepared this post around day 15 but never got to publish it. Believe me when I say that lots have happened since I wrote this. Cellulitis, hospital (in Spain), Dad having Melanoma (and lymphnodes removed!). Anyway, I thought that now that I wrote the stuff below I might as well post it. In the meantime I will write about my ordeals. I am good now and it is wonderful to be home again. See you soon.

************

It’s me again, I am about 50 km from Santiago now. Feet are much better, I look after them good now. I am enjoying the walking very much. The weather has been quite nice lately. It is only about 16°C but it doesn’t matter, one heats up from the walking and the sun being out is the main thing, I feel.

Among the people I have met since my last post is a Canadian family of two sisters, their father and the one sisters little son, seven years old. He was such a trooper, they would walk about 20 km each day and he never complained. Every time they had a break or when they finished walking for the day he would run around pretending to be a car or a plane. So much energy! Yesterday I was walking with an Australian lady, perhaps 60 or so. We had a good talk and the 16 km flew by. She had lost her son three years ago in a car accident. Now she walked the Camino trying to figure out what to do with the rest of her life. Like me.

So a day in the life of a pilgrim here on the Camino starts around six or seven in the morning when the early risers starts rattling with their plastic bags, getting their stuff together. At many of the shelters they want you gone by eight, so that’s when I leave. Then you walk till sometime in the afternoon, get a bed at a shelter and perhaps rest for a bit. Then it is time for showering and washing the clothes you’ve been walking in so they are ready for the next days afternoon. Usually by then, for me, I write a few notes in my journal and then it is time to think about dinner. Most places one can have a menu of the day or a pilgrims menu, I have had that many times. However, in some shelters there are kitchens so some cook. A couple of times I have gotten a frozen lasagne or something and heated it in the microwaveoven. Around eight I start getting ready for bed and it happens that all the pilgrims in the dormitory are in bed by nine. Tired from the days walking, knowing an early start awaits. That’s pretty much it. Some arrive early in the day and have time to check out the town or village, though often there is nothing to check out. I’ve got enough on my plate taking care of my feet and trying to take it all in.

I've taken some pictures here and there along the route but can’t get them out of my camera before I am home, then I will post some so you can see how beautyful it is here.

Wednesday, 17 October 2012

Big walk, day 10

It is the tenth day of my walk. Since my last post lots have happened. I have had a bit of a crisis but I´m back on track now in good spirit. After six days of walking I had to go by wheels to a bigger city where I stayed at a hotel for two days, allowing my blisters to heal and also seeing a doctor that cared for pilgrims. By unbelievable luck he also did lymphatic drainage so he knew about Lymphedema! What are the chances... He said that because of the extra pressure on the lymphedemaleg I am more prone to troubles on that foot. I guess that makes sense now, but I don’t think I could have known. Anyway, he patched me up good and gave me a list of things to get at the pharmacy so I could patch myself up properly in the time to come.
I realized that because of the problems lurking I would not be able to walk enough each day to make it to Santiago before I have to be back for a course at home in early November, so I made the decicion of getting a train to a place about a hundred kilometers before Santiago and walk from there. This will give me plenty of time to get there, enabling me to take it as easy as I need to. I started up today with only four or five kilometers, but so be it. Tomorrow I will do more. Just don’t want to risk anything.
Happy times are ahead and the misery is in the past now. Have met wonderful people, this morning I walked with two girls from Angola and Portugal who were in my dorm and last night I had dinner with some wonderful Australians I have run into a couple of times.
The landscape here in Galicia is beautyful, very lush and green and mountainous. A bit cold too. And rainy, I had to get my poncho out this morning, but I didn’t care, it was just good to be moving by footpower again. 
Travelling this way with Lymphedema can be a little challenging. Getting the compression stocking off in a tiny shower cubicle, putting it on in a lower bunk where there is barely room to sit up. I now have my routines so I manage. A few people here and there have asked about the stocking and it has been perfectly OK. The other pilgrims are friendly and caring. A Dutch lady I met even had some knowlegde about Lymphedema.
Walking the Camino one meets many characters. The other day I met a Spanish lady, she must have been 75 or so, walking in an almost 90 degree angle with a roller with armrests, on which all her bagage was hanging. She brought a roll of big posters with religious messages. Many pilgrims travel by bicycle and some even by horse. Some days ago there was a man in my shelter/hostel travelling by horse, bringing with him his bird in a cage :-)

Friday, 12 October 2012

Big walk, day 5

It is the fifth day of my camino. Today sucks, I have the meanest blisters on one of my toes. I have quite a few blisters but this particular one is killing me. I might stay where I am now for a day to let it heal.
Anyway, since I started on Monday I have been walking 19km - 17 - 15,5 - 12 and today 13 kilometers. Not much really, compared to what most others walk, but the first couple of days I wanted to take it easy - and the 19 was more than enough - I more or less dragged myself into the firstcoming albergue (shelter) of the town at 5.30. Yesterday and today the blisters have slowed me down. If it wasn't for them I could have walked more.
Apart from the blisters it's been going OK. When I on the first day took off the compression stocking to shower the skin was clearly irritated some places as there were red patches to see. I guess the stocking had been rubbing against the skin. I put some long stretches of bandaid on it that I still have on and I haven't had more trouble since that day as to skin irritation. The leg seems to have gone up in size a little bit but that's OK. The other night I was the only person in my dormitory so I grabbed the opportunity and wrapped the leg, which I think was good. When I get to the city of León in a couple of days (if I get there...) I think I will treat myself to a hotel for one night. Have some privacy and a bit of luxury. And then I can wrap again.

I have had some great times out on the roads. Enjoying the utter silence and the nature. Just walking. Slowly. Yesterday, in the town of Sahagún I got myself a pair of walking sticks, they are quite good. Stabilizes my body. I have met kind people from many countries already, looking forward to more. The coffee is excellent and the vino tinto (red wine) is plenty.

I found a couple of videos if any of you guys should want to see something about the Camino de Santiago. Check out these links:
www.youtube.com/watch?v=xLF3Fi1W6OY&feature=relmfu
www.youtube.com/watch?v=XRFGl3k72Mg&feature=fvwrel

Tuesday, 2 October 2012

What triggers Primary Lymphedema?

Lymphedema is a mysterious condition, I am sure you all agree with me on that. Especially Primary Lymphedema as it often appears out of nowhere whereas Secondary is usually due to surgery where lymphnodes are removed or perhaps damaged in an accident.

After a suggestion from a reader (thanks, Wendy) I have created a page to put some light on what triggers Primary Lymphedema to break out. Knowing what causes it doesn't really change anything but I feel it could be interesting to know what triggered others Primary Lymphedema.

If you have Primary Lymphedema, what triggered it? Or was yours present from Birth? I hope you will want to visit the page and write a comment if you have Primary.

Thanks :-)

Wednesday, 26 September 2012

Done!

I have just finished my big annual session of MLD and wrapping before having my leg measured for new compression stockings. It's been going fine and my leg looks good compared to what it was. I feel, and I had hoped, it could have looked even better, especially around the knee but my therapist says it is most important with the calf. She also said that some of the extra fluid has converted into fatty tissue. No way back. This makes me sad. I wish I had been more aware of just how important it is to look after ones leg and constantly taking care of it. Not that I haven't – I simply can't do without my stockings so with them I don't have a choice but I wish I had gotten a nightgarment sooner or bandaged my leg more often and also seen the therapist more frequently. I have always done what she told me though. Anyway, she says that over time we might be able to get the leg down a little more but nothing is for certain. She was quite happy with the result after 8-10 days of MLD and wrapping. I guess it does like quite good compared. I have some shape around the knee now and my ankle looks good too. While waiting for the new stocking I have been wrapped on and off at the therapist and wrapped myself every night to keep it down till it arrives.
We've been using the Mobiderm bandage that I got earlier this year, it's been real good. It does a great job of softening the tissue and thereby making it more mobile.
I am awaiting a new nightgarment. A JoviPak again but this one will go up around the hip whereas the old one stopped about where my thigh-high stocking ends too. I had developed a little bump/extra swelling where the garments ends and my therapist was a little freaked out by that. She worked intensively on it and brought it under control again. Having wrapped my leg she would some days add an extra roll that would go around my belly and the hip, that worked quite well.

I don't really feel the nightgarment has made any difference. It might help keep the tissue soft but when I measured my leg just before the big session it was the same as before I started using it. My fitter will make some adjustments to the new one and says that if this doesn't change anything he might look into a Reid sleeve that I have been recommended. It is not on the Danish market but he can order it from America or whereever it comes from.

After the wrapping session I've been feeling the right side of my groin when training for my big walk. Not good. My therapist says it's irritated after the bandaging and the dodgy walking. That's another thing I've been thinking about reg. being wrapped for a long time, it can't be good for the rest of the body to be bandaged for more than a few weeks as one compensates for the stiff leg and uses the body in a way that might not be all that great. What do you think?
I hope my groin will recover very soon, just over a week till take-off now. I am going to take it easy this week, no training. I have left my boots at the shoemaker anyway to have the one for the Lymphedema foot made a little wider. Usually it feels fine but there are days when it would be good to have a little tiny bit wider, and I might also wear another sock over the compression stocking, there's gotta be room for that too.

Saturday, 1 September 2012

My big walk coming up


My big walk in Northern Spain that I was gonna go on in May this year but postponed is now going to start early October. Soon now. I've got my outbound flight but no return flight as I don't know when I will arrive in Santiago and I don't want to have to rush to make my flight.
I am training for the walk, at the moment I walk up to 13 km, but the other day I walked 17 with a walking group, that went allright. In Spain I am counting on walking at least 20 km per day, hopefully more. Will take great care to not overdo it, especially during the first week. I hear that many pilgrims overdo it and end up with injuries after only a few days of walking. I will listen to my body. Also, who knows how the Lymphedema leg is going to feel about all this.

I wonder what the walk will be like. In general and as to travelling this way with Lymphedema. I will be staying in in dormrooms in pilgrim hostels. I suppose I can take off the stocking and put it back on in the bathroom, but I'm better off sitting on my bed doing it and it might be good for me to just say "sod it" and not care what others might be thinking. I think many of the others will have various problems with their feet that they will be attending too and I guess there will be others with various issues.


I might sometimes "cheat" and stay a night in a B&B or hotel for a bit of luxury and privacy. Those nights I can wrap my leg if I need to, I am going to bring a few rolls of bandages so I can wrap a little.

Thursday, 23 August 2012

As good as new

Next month I will be going for my annual wrapping session before having my leg measured for new stockings. The trousers I use when bandaged are much less black than they used to be, they are not new either. However, they are not that worn and they are the only trousers I can use when wrapped so I am pleased I've got them. The other day I freshened up the colour with some cheap Rit dye in my parents washingmachine and they came out real nice. They don't look very sophisticated as it is (the trousers, not the parents...) but at least they no longer look old and faded (the parents a little, perhaps...). Anyway, they came out nice. I recently got some light blue, wide legged jeans from an auction and I dyed them blue, it worked well too.

Before and after.

Saturday, 18 August 2012

My routines

My Easy-Slide.
Inspired by Elaines comment to this post I thought I'd write something about my routines, hoping that you guys will share yours too so we can learn from each other and perhaps better our situations.

Daily life:
Getting up in the morning I head straight for the shower. I can't go without the stocking for more than a few minutes without the lymphfluid building up. I keep my Lymphedema leg out of the water as good as I can as I feel the water running down acts a little like MLD, just the wrong way. When done I put my foot up on the wall as high as I can and shower the leg from the foot upwards to rinse the soap off. I dry my leg downwards up and then put on my toecap and compression stocking straight away, sitting in my bed or my sofa. I use an Easy-Slide to put it on. Come nighttime I sometimes take off the stocking when I know I won't be doing anymore that day exept laying on my sofa watching TV. Sometimes I use my compression pump. When it is time for bed I put on my nightgarment and go to sleep.
Every now and then I wrap myself for a few nights if I think the swelling has gone up.
I almost never take off my stocking during the day, only if I for some reason really have to. Like today when I will shower in the afternoon to go to a party tonight.
I pull my stocking up when I go to the bathroom anyway. Sometimes I pull it up in graveyards, see this post... I fold it down to the knee, pull it up and fold it back up.

Once a year:
Once a year I go through a wrapping session at my therapist before measured for new stockings at the fitter. My stockings are guaranteed to last for a year. I am usually wrapped for about ten days. I know that some patients are wrapped for much longer than this, I guess it is individually. After about ten days my leg has gone down as much as it is going to, which is close to the size of the good leg so it doesn't make sense to wrap further. My therapist gives me MLD and wraps my whole leg in the mornings and I wear it until next morning where she removes it and repeats the procedure. After my last session I got this bandage that I use when I wrap myself and that my therapist will be using at my next session, which is next month. During weekends I wrap for the night as good as I can. I use a castprotector when showering, and I wear my old trekkingsandals and some very baggy trousers during the day. After the ten days my fitter measures my leg and orders one new stocking. He gets them from Medi in Germany and it usually takes 10-14 days but can be done in as little as five days as a rush order. After a few weeks with the new stocking, testing that it is OK, he orders one more. The stockings are guaranteed to last for a year.

Apart from the big session described above I have MLD perhaps four times a year, just for an hour. I'd like to have it more often, say once a month or more.

What are your routines? How long are you wrapped for at the therapist? What kind of stocking do you use?

Tonight I am going to a friends 40st Birthday and I am going to wear the new, dark blue dress. The first time. I picked it up from the taylor the other day, it had to be shortened and the jersey fabric was too "alive" for me to mess with. Usually I do these things myself, but couldn't risk ruining the beautyful dress. I am looking forward to wearing it. Tomorrow I am going to my nephews 12th Birthday and I will be wearing the floral dress below. I got that from Asos last year or the year before. It will be perfect for tomorrow, a hot and sunny summers day. Looking forward to feeling feminine and dressed up.

The dress before it was made shorter. I will wear my white
Converse hi-top sneakers and a big turquise-coloured necklace with it.

Photo from asos.com
Will wear the sneakers again and possibly a little necklace with a red stone.


Friday, 10 August 2012

Pants down but not caught


My compression stockings are getting worn. Next month I am going for a wrapping session before being measured for new stockings. Lately they have been sliding down a lot during the day. The other day I came home late in the evening, I had been out with a couple of people from my Tai Chi/Qi Gong/Martial Art class and because it was so late before I hung the stocking to dry it wasn't dry enough to put on next morning so I had to put on the dirty one from the day before (I only have two stockings). So the next day it really kept sliding down. I was walking some of the way home from work and I tried as best I could to pull it up from the outside of my jeans. Wasn't working for more than a few minutes at a time. I ended up stepping into a graveyard I passed, went behind some bushes, quickly pulled my trousers down and my stocking up. No one else was there (I think), luckily. What a sight it would have been, and in a graveyard!

Wednesday, 8 August 2012

I sold my boots

Yay!
I can't seem to find any posts about my walkingboots so perhaps I never wrote about them? Anyway, earlier this year I got some really good walkingboots for my big walk I was supposed to go on in May (now going later this year, more about this soon). I bought two pairs, two different sizes. One size for the good foot, one for the bad. Monday this week I sold the two boots I won't be using. A young girl with Primary Lymphedema in her left leg matches me in size and she bought them from me, I met up with her at a trainstation where I handed them over. She had tried the boots on in a shop so she knew the sizes where right.
I am so pleased they won't go to waste and that I managed to get some money for them. I am thinking of setting up a shoe board here on the blog where people can sell their odd-size pairs. What do you think?

Tuesday, 31 July 2012

Don't give up

A while ago a friend of mine shared a video and I thought I'd share it with you guys. It is not about Lymphedema as such but about not giving up. It is about a man who thought he'd never walk on his own again. Everyone had given up, exept one. Some Lymphedema patients find themselves in the same situation. As some of the comments to my previous posts proves, due to so many doctors being so ignorant of Lymphedema, so many Lymphedema sufferes around the world are wrongly – if ever – diagnosed and ends up in desperate situations. Huge limbs out of control. Amputated limbs. Wheelchair bound. Pain.

See the video here.

A song comes to mind. The beautyful "Don't give up" with Peter Gabriel and Kate Bush. I never paid much attention to the lyrics and assumed it was about love but a couple of years ago I learnt that it is about unemployment. However, I find that many of the phrases in this song are valid for other aspects of life, including life with a serious ilness.

As only one of the three winners of the give-away contacted me with their address I have now picked two others instead of the no-shows. Christina and Hutch, please send me your addresses and I will make sure the books get to you. Yay – congratulations!

Tuesday, 24 July 2012

Summerwear

Can you believe it, summer has been quite mixed overhere with lots of rain, wind and grey clouds but this week is really hot and sunny and I was looking forward to wearing some of my summer outits, then what happens – I get a sun rash, arghh! It is on my neck and upper chest and my skin is really irritated. Have to cover up. I put on some cream I had in the drawer, Traumeel. It is an all natural ointment that can be used for rashes, minor cuts and other skinthings. After applying it last night I googled it a little and discovered it can be used on swelling too. That's what it says, anyway. I also found a place where it said it could be used for muscular discomfort due to Lymphedema. Others states it is good for sportsinjuries, inflammation and pain. Many people rave about this product. It hasn't performed miracles for me yet, but I haven't given up on it completely. It does soothe my rash a little. Anyone out there tried this for anything related to Lymphedema?

Anyway, so what I could have worn is the dress below, I wore it a couple of weeks ago on a nice day. I recently dug out some old, long dresses that I can wear now that I've got my Chucks, including this one. It must be at least 15 years old but it is still fine, I haven't worn it all that much. I do think I need to give it a stich or two below the last button as it exposes my leg a little more than I care for when walking and cycling.
It felt so good wearing a summers dress again.

Xxxxx and Xxxxx, you have both won the book "The emotional challenges of Living with Lymphedema" in my Give-away, please send me your adress on thelymphedemagirl@gmail.com before August 1. After that I will pick two others.


Monday, 16 July 2012

Winners of the give-away


And now to the moment we've all been waiting for... Time is up, my first – but hopefully not the last – give-away has ended and I picked the winners. I wrote all the names down on little bits of paper, put them all in my new hat, looked away and picked three. The winners are:

Elaine
Xxxxx (your comment on "My first give-away").
Xxxxx (your comment on "More flaws and handicaps").

Congratulations :-)
Please send me your details on thelymphedemagirl@gmail.com and I will make sure the books get to you. Thank you, LymphedemaProducts for doing this.

I really appreciate all the comments that has come in and I hope they will keep coming. Like I said in a comment the other day, now I can see light on other planets in the dark, unknown Lymphedema emptyness. Thank you. I am not alone. We are not alone.
I am already thinking about what the next give-away could be. Let me know if you have any ideas.

Wednesday, 11 July 2012

Dry skin

My skin has been quite dry lately. I haven't been very good at putting lotion on either. Last week I got some oil – Evening Primrose and flaxseed – to put in my vegetable juice when I make that. One tablespoon is appropriate for a big glass (400-500 ml) of juice. I usually go for carrot, ginger and lemon, sometimes also an apple, it is beautyful! In the season I also add beetroot. Anyway, a spoonful of oil in the juice does wonders for my skin. The winter before last winter I didn't put on lotion at all, the oil was enough. Skincare from the inside. How do you look after your skin?

Check out the cuteness below, it is from my parents garden where they often hang out (the deers). It didn't use to be like that when I was a child but in recent years the numbers have increased and perhaps they think the nearby forrest is too crowded. Perhaps they just feel adventurous. These are quite young too but at the moment there is also a tiny baby, haven't seen it yet though.




Saturday, 7 July 2012

Clothes from the personlig shopper

Here comes some of the clothes I got from the personal shopper a couple of weeks ago. I loooove this beautyful dark blue dress. Obviously it is too long and have to be shortened which will probably make it look less Greek goddess but I think it will be nice in a more userfriendly length too. It has an elastic band right where I put the belt. This gives it a baggy look which I find handy, especially in case of overdosing on desert, hmm.
The dress can be dressed up or down according to the occasion. I think that with the right accessories it could be worn for a wedding, but also for much less formal things – the new sneakers, a casual long necklace, a big shoulderbag and loose hair would dress it right down in a cool and stylish way. It is by Mango and it is 100% cotton.


I also got this top and the green skirt. I have returned both though but I thought I'd show it here anyway for inspiration. I really do like the look but wondered how much I would be using the skirt afterall. I like the way it sits high up, just under the boobs. The belt is the dot over the i, as we say overhere. I felt a little like the mum from The Little House on the Prairie. I still love watching that.


I was looking at asos.com the other day – their sale too is on – and I found a couple of maxiskirts and -dresses. Didn't buy anything though but they really have a big variety. The skirt below could easily be worn high up like my green one, and it is reduced too. It comes in four colours.


The Give-away is still on, you can still comment and have the chance of winning the book "Overcoming the emotional challenges of Lymphedema" that I am giving away together with LymphedemaProducts.com. Read more about the Give-away here.

Monday, 2 July 2012

Me and Chuck


At last! I am now the happy owner of two pairs of Converse All Star hi-top sneakers, one size for each foot! I am so excited! I got the one pair about a month ago from an on-line auction a little like eBay and the other pair yesterday with 20% off at a shoppingcenter near me. Yay! Now I can wear my long dresses and skirts. Because I've got the pads sewn into my stockings my ankle looks quite big and so I want to hide it – that I can do with these hi-top sneakers. It does still look a little bit big but I will be wearing long outfits anyway and perhaps I can sometimes wear an old stocking from which I have removed the pads. I am thinking of taking out the pads in one of the two stockings I have and wear at the moment.

If anyone is interested I'd be more than happy to sell the two sneakers I will not be using. Probably not worth it for readers in the US but perhaps for those in Europe. Make me an offer, I am very negotiable.

Sizes: Left: 6.5/39.5. Right: 5/37.5

Todays outfit:


Wednesday, 27 June 2012

Working around it

In my last post I said that I had somewhat accepted having Lymphedema and the routines I have now is for life. But there is more to it than that. I guess I relatively quickly accepted it within myself, although I still tried to cure myself, but when it comes to others it is a different matter. I still feel ashamed and I do everything I can to hide my foot and leg. It sometimes feels a bit surreal as it is not like I have committed a crime or anything and I shouldn't really feel ashamed but I do. However, I feel that I am getting better at working around it.
Over dinner at the first night at the patient weekend earlier this year I talked to Sophisticated Tina and I told her I was ashamed. I think she was telling me that in the Summer she would go swimming in the sea with her little daughter, wearing an old stocking and I said I could never do that. She asked me how long I had had Lymphedema and when I said "almost three years" she said "oh, you are not there yet", meaning that she was way ahead in the process of accepting it/not fussing so much and that I would get there too one day. Her words comforted me but I still find it hard to believe I will ever get to show my stocking. Who knows... If only people weren't so judgemental and if only I wasn't such a sensitive wuss ;-)

On Friday I went to the personal shopper again, stay tuned for more about this. It wasn't as mindblowing as the first time but I did get a couple of nice things of which I have to decide what to return and what to keep. Definitely one keeper, a beautyful long dress that can be dressed up or dressed down according to the occasion.

I have decided to wear the knee-high everyday at work this week, over the thigh-high, to see if it makes any difference. I doubt it as it is fairly loose, but we will see. I am going to see the fitter next month so can discuss matters with him and perhaps order a better one.

I thought I'd share that the sale is on at www.evans.co.uk where they sell very wide fit shoes.

Sorry about the koala bear, he's got nothing to do in this post but when when looking for a suitable picture in my archive I stumbled upon him and thought he was so cute. He is from this post about my Top 2 Australian songs.


Thursday, 14 June 2012

How far will we go?

In the beginning of my Lymphedema life I was very keen to experiment with various things to find a Lymphedema cure. I felt certain that I could cure myself and make it go away. I googled high and low and I tried many things. Wheatgrass juice, Epsom salt baths, Chlorella, green clay, herbs, reflexology etc. Gradually I stopped and a little while ago I suddenly realized it seemed I had given up and accepted that this is what it's going to be like for the rest of my life. I guess part of it is true. I guess I have somehow accepted that this is my life now. However, even though I doubt a Lymphedema cure as such exists, I do think it is possible to make Lymphedema a whole lot better and control it. I know two ladies who does. One of them, K, claims to have healed herself completely by cleansing her body and mind. I don't feel certain it was really Lymphedema she had though. The other lady, W, keeps her Lymphedema at bay so much so she can wear skinny jeans and fancy boots, even more than Sophisticated Tina. She does it by eating a very restricted diet. She does wear a compression stocking though. K doesn't. This leads me to a dilemma, something that I have been wanting to write about for a long time: How far will we go? How much are we willing to "pay" for that slim leg?
Personally I don't think it would be worth it for me giving up all those lovely foods that I cherish, to have that slim leg if I would have to wear the compression stocking anyway. But what if I could get rid of the stocking? I don't know. I am thinking there has got to be a balance. What's the point having a slim leg if obtaining it makes me miserable? I guess we have all got to find our balance. What are your thoughts on this?

Comments are ticking in after I announced my Give-away and I appreciate it. Keep 'em coming :-) Your comments mean a lot to me and they are for everyone to benefit from. I feel that with this blog I shout "hello - is anybody there?" into some dark, unknown Lymphedema emptyness and so when you guys write comments to my posts I feel I'm not alone with this akward condition. Thank you.

PS: Bad idea looking for naugthy cake pictures half hour before lunch :-/

Monday, 4 June 2012

My first give-away!


To try and get more of you sweet readers to place comments to my posts I have decided to have a little give-away. I have been debating with myself what the prize should be. Something universal, preferably something related to Lymphedema. I decided on the book "Overcoming the emotional challenges of Lymphedema". I haven't read it myself, but I'd like to. I find that dealing with the physical stuff is more than enough but the emotional mess that comes with getting Lymphedema is perhaps even more dificult.

Together with LymphedemaProducts I am giving away three copies of this book. From all the comments placed with any post here on the blog from today till July 15 this year I will cover my eyes and pick three, the winners all get one book, send anywhere in the world (except the usual airbases etc.).

It is dead simple to place a comment, click here for a miniguide if in doubt. You can place as many comments as you like to enhance your chances as long as they are Lymphedema related.
You don't have to write your address, just some kind of name, I will ask you to send me your address if you win.

The book is also for purchase at www.lymphedemaproducts.com for $34.95.

Start commenting!  :-)


From the book:
Overcoming the Emotional Challenges of Lymphedema is designed to help: 
(1) understand the emotional challenges of lymphedema; 
(2) overcome these challenges and avoid common pitfalls; 
(3) recognize problems and know where to go for help; 
(4) communicate effectively with family, friends, coworkers, and health care professionals; 
(5) set and prioritize goals; 
(6) identify stages in the process of changing; 
(7) choose specific actions for reaching goals; 
(8) monitor progress and maintain gains; 
(9) learn the ten signs of good coping and six warning signs of ineffective coping. 

This book is a comprehensive guide for: 
(a) people with lymphedema; 
(b) friends and family; 
(c) parents of children with lymphedema; 
(d) health care professionals; 
(e) psychotherapists.


Monday, 28 May 2012

The knee-high

I have finally worn my knee-high compression stocking to put over the thigh-high. It wasn't as terrible as I thought it would be, in fact I barely felt it. I may start using it more when sitting down a lot. I notice that my good foot (not all that great anymore) doesn't like when I sit still and so I find it logic that the bad leg doesn't either.

It must be around this time three years ago my Lymphedema started. I have made a change in the "about me" section overhere to the right, as it felt a little depressing everytime I updated it to yet another six months with Lymphedema. This way I don't have to worry about it and people can still figure out how long I have had it.

Yesterdays outfit: The new trousers I got on sale recently, haven't worn them until yesterday. They are so comfy, the material is so light and great for summer and the ends fold just the way I like it. Stylists may advice against it but I like it and until I get those darn high-top sneakers this will have to do. I don't think my legs look enormous like in that other post recently with the widelegged jeans.
The sneakers I'm wearing are some really cheap ones I got in two different sizes, 38 for the good foot, 39 for the bad. No one can tell.



Saturday, 26 May 2012

Heat


It is very hot and summery at the moment where I am. Unusual with such temperatures in May. Even though it now comes with a bitter taste to it I do still love summer. The smells, the light, the sounds.
I have put my good friend, the spraybottle, in the fridge so when I come home having been outside in the heat I spray my leg (with stocking on) with the beautyful cool water. It is heavenly! It also provides a little extra compression as the fabric contracts.

Yesterday I brought out my summer clothes. My wardrobe is not very big so I put away the winter clothes during summer and vice versa in summer. I looked at some long dresses and skirts I have, they are very old but I tried them on and found a few that I could definitely wear with some hi-top sneakers. If I ever get around to get them. Will bring pictures of outfits when it happens.

I have lots of ideas for posts and a few drafts I'm working on, stay tuned. I wish I had time and energy to write more often.

Saturday, 19 May 2012

Harem pants



The other day I ordered these really light berberpants/harempants. I am thinking they will be good for summer. They are a sort of mix between a skirt and trousers/pants. With them I can feel that I am wearing summerwear, and I imagine they will feel cool as well. Perhaps a pair of high Converse sneakers would go well with them, what do you think?
I have ordered them in white and I am wondering what to do as my two compression stockings are both black. Perhaps I could get some white or nude leggings. Only thing is I don't need more layers on the leg than absolute nessesary, but the dark compression stocking would show through the thin fabric. They won't get here until July so I have time to work out what to do.

Wednesday, 16 May 2012

My flight exercises

Yay! The other day a reader asked me to send the PDF-file of my in-flight tips and exercises. The first person who's asked. Actually, when I first wrote the guide here on the blog I thought "I'll make the PDF-file real soon so I'm prepared if anyone asks" but I never did, until now. So now I have it, if anyone is interested. It is the same info as here on the blog but you can print the PDF-file and take it with you.
Contact me on thelymphedemagirl@gmail.com if you want one.
Update: Download the PDF-file here.




Sunday, 13 May 2012

Mobiderm bandage

I was gonna leave for Spain to go on my big walk today but I have decided to postpone it. Dad went into hospital last week and have had an angioplasty. What a scare. He is fine now, almost running around like before and I suppose I could have gone but he only came home yesterday and even though he is good I don't feel like going at this time. I just want to be near him. Not so much for if something happens but because I love him and feel grateful that he is still here.
I had chosen this time of year very carefully for the trip to avoid the heat due to the compression stocking. Perhaps I can go come autumn. Or next year. I don't mind not going. For the time being I'd rather be home with Dad.

My knee-high compression stocking to wear over the thigh-high when working has arrived but I haven't tried it yet. Don't really want to, but as it is meant to bring my calf down I guess I better give it a go.
I have also recieved the Mobiderm bandage below to use when I wrap my leg – or my therapist does. The little foam squares creates a pressure differential between where the squares are and the surrounding area which provides mobility in the tissue. It softens it up so the pressure from the short stretch bandages can work even more effectively, and also the stocking during the day. It provides good conditions for the microcirculation.
I got it from my fitter. It comes in a couple of lengths and widths and also in a half or full leg boot/stocking to use during the night. This one I got is 10cm by 3meters. It goes over the stockinette/tubegauze and under cotton and shortstretch bandages. I am to wear it on the lower leg. My therapist have sometimes used one on me, it is very good. Here you can see it applied on a lower leg.



Wednesday, 2 May 2012

Brunch with Tina

Brunch with Sophisticated Tina went well. It was good to see her. I am glad I have met her. She is about ten years older than me, but it doesn't matter. The first time I went to the patient weekend I dreaded it a little as I knew most of them would be women with Lymphedema due to breastcancer and therefore most likely a fair bit older than me, but once I got there and had adjusted – Lymphedema was all new to me and everything was a mess – I had a good time. It didn't - and still doesn't matter that we are of different ages, because we deal with the same things, we have the same worries and the same challenges. Lymphers older than us may even have more experience with Lymphedema than us.

Anyway, Tina was looking very stylish in some relatively tight trousers, boots – not long, not short, somewhere in between, a dressy t-shirt and a blazer. She had taken the good leg of the trousers in so it was sitting the same way on both legs and I tell you, no one would ever guess anything was wrong. Tina might see it herself, afterall we are our own worst critics, aren't we, but I didn't see anything. I doo think her calf might be smaller than mine though.

I am excited because I might be able to share pairs of shoes with her. We both have Lymphedema on the right leg, but she has smaller feet than me and wears a left 5 and a right 6 and I wear a left 6 and a right 7 – we can split the size 6 pair!! Wouldn't that be fantastic!

I think she shops a lot. She has many boots, shoes, sneakers etc., all in two different sizes. She has bought them over many years though.

Her look was spotless with nice, stylish hair, funky glasses and a nice make-up. I want her glasses. Hang on, I use contacts... Doesn't matter, I still want them ;-)

My knee-high arrived yesterday. Not looking forward to wearing it, I fear the bones near my toes will not tolerate it, but we will see.

Wednesday, 25 April 2012

New trousers

The other week I got these new trousers. They are quite long so the legs sort of folds over the ends so they don't show, I quite like that. They were very reduced because they are from last year, but who cares.

They look kind of stiff but are quite soft. Good quality. And the price was right.


I am thinking a pair of high, white Converse sneakers would look funky with them. In fact, they would be handy for a long skirt or dress too now that summer is approaching. Only thing is they are quite pricey overhere, and I would need two pairs. I am looking at online marketplaces for unused pairs, perhaps with a little luck I could find a pair - or two.

Today, yesterday and the day before I have been to physio therapy, getting MLD and being wrapped. Later today I am going to the fitter to have measurements for the knee-high taken.

Sunday I am having brunch with Sophisticated Tina, really looking forward to hanging out with her. I will let you know what she was wearing ;-)


Saturday, 14 April 2012

Going pilgrim

I am going for a walk. A long one.

El Camino de Santiago de Compostela. For over a thousand years millions of pilgrims have walked here in search of the truth. In search of forgiveness. Cleansing. They have walked across northern Spain to the city of Santiago de Compostela to visit the cathedral where the remains of Saint James – one of the twelve apostles – is said to be burried.
Legend has it that the Camino establishes connection to the deepest layers of life. It is known for its supernatural and spiritual powers. The route allegedly lies exactly under the Milkyway which is said to enrichen the route as well as the pilgrims with a special energy. 
Will I find the truth? Will I find faith and the spiritual dimension? There are no guarantees but the Camino is said, in mysterious ways, to change the walkers for ever...


I will be starting in a small town shortly after Burgos.


There are many pilgrim routes that all lead to Santiago. The one I am doing starts on the French side of the Pyrenees and adds up more than 800 kilometers but I am choosing to start roughly midway, about 400 kilometers (248.5 miles) from Santiago. If time and legs allow I'd like to furthermore walk the 100 kilometers to Finisterre on the Atlantic, that bit is supposively very beautyful. I haven't booked a returnflight but I am counting on about three weeks which works out averagely 20 kilometer per day. That's four-five hours. 25 km per day if including Finisterre. That should be possible once I get going. Some pilgrims walk up to 40-50 km a day, but I think most walk around 30.
I have started training, gradually working my way up to more and more kilometers. At the moment I walk about 12-14 km two or three times a week. It's been going fine so far. I wear my good old pack, the one I will be taking on the journey. At the moment I think I've got 3-4 kilos in it but also the weight is to be increased before I take off mid May. I expect to take 6-7 kg plus water and a little food. And I have got some good hiking boots. They were very reduced and so I bought two pairs, one size for each foot. For hiking I think it is important that they fit perfectly. Mine are near enough.

I am looking forward to my trip. I can feel that it is time for me to go away for a bit and clear my head. Just walk. Do some thinking and hopefully get to the point where there are no more thoughts to think. Mindfullnes.

Update: If you want, check out the following posts about my adventures:
Big walk, day 5
Big walk, day 10
Big walk, day 15
Cellulitis